By Dawn Graczyk, Sunshine Mom
“I don’t know why you are surprised at impulsivity in your children. They are, in fact, just like you. Whatever comes to your mind, it just flies right out. If you decide to take a trip, you just go.”
Impulsive? Me? No.
Thriving When Choice and Freedom Seem to be Slipping Away
From where I sit, my life feels tightly controlled, often choiceless. I am fiercely independent; I loathe the feeling that I am controlled by Friedreich’s Ataxia, handicap accessibility, or medical appointments. Wherever we go I need to bring medications, wheelchairs, snacks, plenty of water, and any emergency equipment we may need. So I grab for the choices I can make and the control I can have.
It’s Hard to Commit When You Never Know What’s Next
The idea for this trip jumped into my head in the face of a diagnosis I cannot control with an end that I cannot prevent.
Traveling with Diane (Executive Director of Spreading Sunshine), I’ve become aware of the necessary, forced, spontaneity in my life. I fear committing to a time frame or hotel date because anything could happen and make us late or miss a stop altogether.
At some point, we will likely need medical attention. There will be times that we plan to keep going, but Marissa needs rest. I can’t say how long we need for getting ready, eating, or spending time at an attraction.
The truth is that I don’t want to live “one day at a time,” but I have to. (I really don’t like this cliche.)
Living Life with an Open Hand
So, I don’t think much farther than tomorrow, and I plan tomorrow with an open hand. Never have I felt the need to go somewhere and do something. This is not mine anymore. As much as I hesitate to attribute this to God, the way it has all come together cannot have happened without His hand. He is teaching me what I couldn’t teach myself and what a team of doctors couldn’t.
I’ve learned a few things. Life is short and unpredictable; live and love fiercely. Embrace the journey and enjoy the road you are given, which is unique. It is yours. It belongs to no one else. You must choose to push hard when it is uphill and rest easy on the downhill.
Be responsible. Plan. Do so with hands, mind and heart open to God. Trust Him to give, take and direct. Recognize that you are not, at any point, in control.
When moments of fear; chaos and grief arise, recognize them for what they are. They are moments in a story that is not over. Just as when you read a book or watch a movie, you cannot race through these pieces or the story loses its meaning and it’s beauty. Embrace the moments when they hurt as much as you embrace the moments of happiness. Learn from them. Lean into them. Trust them. They are yours. This is joy.
Thank You for Sticking with Me
I pray those that are helping me plan know how much they mean to me. I pray that when I cannot plan, they are able to understand and extend patience. I am grateful for the love, support, and community surrounding me, who I appreciate even more in my chaos. God Bless you all. Thank you for sticking with me.
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